Our Digital Critical Friends (DCFs) were invited to help in designing and delivering the Public Panel engagement events over the summer. The events were held across the summer with 50 people selected by lottery from across Wessex to consider the question “How do we create a decision-making process for the SDE that is trusted by the people of Wessex?” 

Some of our DCFs explain their involvement in their own words:

Lindsay:

“As a Digital Critical Friend of the Wessex Secure Data Environment, I was invited along to contribute to the Public Panel events. I feel the SDE project has the potential to become a valuable asset for the NHS if it is established in a robust way with wide support from the British public and it is up to us to get involved, give our support and ensure this happens. I feel our opinions and concerns are listened to and the team developing this project genuinely want our input so that the SDE is successfully rolled out.

At one event, I was asked to give a presentation on how and why I got involved as a DCF. I was pleased to share my personal story of how the NHS has saved my life twice in pioneering surgeries after I was born without an oesophagus. Like so many of us, I feel I owe so much to the NHS and passionately believe in protecting its future: I want to do what I can to sustain this wonderful institution and feel a sense of personal satisfaction by contributing to this project.”

Sue:

”I was glad to have the opportunity of attending two of the Public Panel sessions acting as the Administrator at one and as a support Facilitator at the final meeting.

It was a privilege to meet members of the public, face-to-face, and observe the lively debates, enthusiastic engagement and the thoughtful questions being asked by the participants. I learned a great deal by hearing the opinions of the Wessex residents about aspects of the WSDE project first-hand.”

Celia:

“I attended the final Public Panel on 28^th September.

My main role as a DCF was to assist the facilitators of two groups at different times during the day, without influencing what was said by the public participants.  It was also a listening role, to help ensure that future reports of the proceedings accurately reflected the views of the participants.

In particular, I helped the facilitator by writing the agreed notes of the group on the board, which left them free to concentrate on the discussion of the various topics with the participants.  At times, I also encouraged participants to repeat or expand on some of their passing comments to ensure they were captured in the notes.

I found the day both interesting and informative.  I could see first hand, the challenge the facilitators sometimes had in encouraging individuals to voice their thoughts.  It was important to convey that the views of each member of the group counted equally and were to be taken into account, and not just the views of those who spoke up readily.  I thought that the voting process at different stages of the day was beneficial, as it encouraged individuals to make their own, independent choices.

The talks throughout the day were also informative, and helped build the vision of the project, for both the DCFs and the public participants.  This reinforced my belief in the importance of the project, with its great potential to help patients, the public in general and the NHS.

I also took part in the face to face planning and preparation meeting on 10^th July, before the first Public Panel.  This included hearing the two DCF speakers, and we were able to give really positive feedback on how well the talks came over.  It was good to see the plans in action on the 28^th September.”

Marcus:

“I attended the last day of the public engagement process on 28th September 2024 as a Critical Friend.  I was essentially an observer so I did not participate in the engagement itself, but rather oversaw proceedings and discussed them with participants in order to satisfy myself that the process itself was properly applied and that what was recorded accurately reflected the outcomes which emerged.

I was impressed with the quality of engagement and the level of detail that members of the public clearly had of what they were examining and considering.  They were not deterred from raising issues they felt needed to be challenged or explored which was very reassuring.  They were, however, asked to examine specific concepts rather than raising a wider, more abstract way range of issues.  I came away from the day very satisfied that members of the public had been provided with a very real opportunity to be involved in the project and its development.”

Our DCFs tell us a little more about themselves, why they were interested in getting involved and their experiences so far with the Wessex SDE.

Lakshmi:

“My name is Lakshmi Kulkarni and I am part of the Basingstoke Hindu Society and volunteer with them for various projects.

Most people in our community are very wary about giving any data out especially if it is health data. My motivation to become DCF stemmed from this as hopefully listening about the SDE from a known face or someone similar to them, they could be more accepting of the idea of the Wessex SDE. I am running various health awareness sessions for the community over the next few months and will cover all age groups and will talk to them about the need and benefits of having the SDE. I will hopefully be able to explain it to them in their language as I can speak 4 different Indian languages.

The training has helped me understand the need for the SDE and I will be able to relay this to the community and also collate feedback from them as they are the lesser heard members of our society.”

Andy:

“I have worked with, and in, IT for too many years and more recently have been closely involved with information security, particularly as it has developed into cyber security.  As a result, when I received an invitation to consider joining this programme as a digital critical friend, I thought it might be interesting, stimulating and, most importantly, helpful to the programme to share my experience and knowledge.  Representing the ordinary people, whose very personal medical information would form the basis of the system, also inspired me so that I could gain answers to all those questions anyone would ask when faced with a development such as this.

I was delighted to be offered the opportunity to join the programme, and subsequently joined the required training sessions to see what was required, and to learn new stuff!  The online training answered virtually all my questions, but there was always the opportunity to submit additional questions which were answered comprehensively and quickly.  Carried out in a very friendly and encouraging atmosphere, the training updated some of my knowledge, told me more about things about which I already had a little knowledge, and introduced me to new specialisms such as those in medical research.

I was asked to talk to other members of the public and to help them to understand and make the most of the contribution they were making to the programme.  I have offered to get more involved with one of the working groups that look at the more specialist areas of the programme and that will increase my contribution a little more. The commitment overall is exactly as promised with the option to give more time to the programme if so desired, particularly spreading the word about the programme and the huge benefits that should accrue from it in the years to come.”

Sandra:

“Research has shown that since the Covid Pandemic, there was not enough data collected from ethnic minority groups. Some of these barriers are because of a lack of awareness. I would like to encourage more people from ethnic origins to get involved in research to change this status. I believe that Research is important to promote better health for the future.”

Ewa:

“As both a patient and a retired scientist with a background in clinical research, I was immediately drawn to this project. The NHS data is uniquely extensive, and enabling safe, efficient access to it is a challenging yet vital undertaking. One of the biggest challenges is fostering public confidence in the security of their data, and I believe the DCF initiative can help address this by promoting greater transparency and openness in the process.

The opportunity to represent the voice of the public and patients from the very beginning has been invaluable. Personally, I was impressed by how the project’s management welcomed us as equal partners. There was openness on both sides, and our questions and concerns were met with genuine respect.

Thank you again for including us in such a meaningful way.”

The views and involvement of patients and the wider public will be vital to the development of the Wessex Secure Data Environment (SDE). We will be speaking to people across Wessex about the project, to make sure that everything from data access to our research priorities are in line with local expectations. 

An early initiative has been to prioritise hearing from groups of people who are often less heard or visible in ‘public and patient involvement and engagement’ (PPIE).  

Working with existing community organisations, charities and faith groups, we have visited and met with over 500 people in 30 grassroots groups representing ‘seldom-heard’ communities across Hampshire, the Isle of Wight and Dorset. 

The ‘seldom heard’ groups we have spoken to include carers, people living with long-term and/or complex conditions, people with a history of substance abuse, people in economic disadvantage, settled travellers, veterans, disabled people, older people and young people. 

We are currently compiling a report that will capture the key themes from these conversations – what people and communities from these groups thought about the idea of the SDE. These conversations will help us develop recommendations and principles for how we shape our PPIE work, communications and project roll-out activities in the future. 

A summary of the report will be shared directly with the groups we’ve spoken to. This will also be made available to all, along with a link to the full report, published on our website in due course. 

To find out more about how you can help shape the development of the SDE in the future, please visit our Get involved page.